I've had Lupus for about 5 years (that I know of). I just recently have become sensitive to the sun. I have a red spot about the size of a quarter on my face - the more sun I get, the angrier it looks. Also, I am starting to feel yucky when I'm in the sun for more than an hour. I cover my body entirely if I'm going to be outside for more than a few minutes. I am a very outdoorsy person, so this reaction to the sun is not 'my cup of tea'.
I want to know ;
- is being in the shade, but outdoors is ok (I feel ok if I do it) ?
- in the fall/winter/spring, when the sun isn't as strong, will I be able to be outdoors more?
- can I get by with rationing myself to an hour a day in the sun? I seem to feel ok if I stick to this restriction, but I need to know if I'm pushing it by doing this?
I have exactly the same problem--does your rash itch???? Mine burns , hurts and for a while it itches. I used to give dressage (horse lessons) but within 5 minutes in the sun , i felt vey very sick. It has gotten worse over the years. Mine actually started off and on in 1990. After all these years, I have learned how to deal with it. I went to a horse show this last weekend to help a little girl show her horse. I dodge from shady spot to shady spot with my lawn chair. slather with the strongest sun screen. At some point , I have to go out into the sun to deal with the horse, so I limited it as much as possible. They often found me just sitting still when possible due to fatigue. I pretty much gave the lessons up, but this family talked me into it because they saw a prior record our barn had. I feel a little like a vampire , only come out after the sun goes nite nite. Its very frustrating
i too am curious about how much sun is too much. the doctors suggest it is really individual and that we'll "know" when we get too much. i don't go on open hikes anymore (lucky to have redwoods nearby), dip myself in sunscreen, and particualarly protect my eyes. I am wondering if the others of you who are sun sensitive also have the Anti-SSA (Ro) antibody? My doctor explained that this can make you extra sun sensitive. I notice aches even after xeroxing or lots of fluorescent light. My other sugestion is the face masks they sell at "Sunsolutions" (pretty comfortable).